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Christine Grube – 2017 Rare Impact Award Honoree (Awarded Posthumously)

2017 Honoree
Rare Impact Award

Christine Grube

Christine Grube

After being diagnosed with Giant Axonal Neuropathy (GAN), a rare genetic disorder, Christine (Chrissy) Grube volunteered to be… Read More

Dr. Robert J. Desnick, MD, Ph.D – 2017 Rare Impact Award Honoree

2017 Honoree
Rare Impact Award

Dr. Robert Desnick

Robert J. Desnick, M.D., Ph.D.

“It’s very satisfying when your research efforts lead to new diagnostics or treatment for… Read More

NORD Unveils “Do Your Share for Rare,” Year-long Campaign for Rare Disease Public Awareness

DoYourShare cover photoDanbury, Conn., February 28, 2017—The National Organization for Rare Disorders (NORD), the leading independent nonprofit organization representing the 30 million Americans… Read More

Family Moves Across State Lines to Receive Better Access

Gabby was born with the rare condition vanishing gastroschisis and lives with short bowel syndrome. Gabby was born with the rare condition vanishing… Read More

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Nominations Open for NORD’s 2017 Rare Impact Awards

Washington, D.C., October 14, 2016—The National Organization for Rare Disorders (NORD), the leading independent nonprofit organization representing the 30 million Americans with rare diseases, today announced it is accepting nominations for the 2017 Rare… Read More